Hello. I’m new.
Hello, everybody. I’m a chronic pain patient, untreated, and new to this site. I read helpful comments here. I hope I’m more in the solution than the problem, but I do find this a problem. And I tend to write about that at times. I’ve been fast tapered off of pain meds, three times. The last time I lost 20 pounds, barely over 100 to begin with.
I have fibromyalgia, Lyme disease, osteoporosis secondary to endometreosis and surgeries because the endometreosis also removed my ability to have children. I have boney structures that need surgery. I won’t do it. I will not subject myself to more pain at this time, since to date I feel the effects of each diagnosis.
Sometimes I feel very desperate in pain, but generally I get by, although I can’t leave my home due to pain. I feel very strongly about having been placed in this situation. Not my diseases, but non treatment of pain–it’s not acceptable to me.
I have been on linkedin advocating in my menial way for pain patients, and I feel our voices are being squelched. I don’t believe for a minute that this administration is unaware of this travesty occuring in the US. I am angry, but I’m learning not to allow anger to overtake me. Sometimes I just cry. Tears roll down when I realize what is happening, this attack on pain patients who cannot defend themselves. I have seen this in history, pre WWII.
My question is what can be done? Pain patients have contacted congress, senators, and representatives. I came here searching for more answers. If anyone has input, please feel free to inform.
Thank you so much.
Interested in more discussions like this? Go to the Chronic Pain Support Group.
I read your post and I understand the consequences of suffering with pain on a daily basis.
While my doctor has suggested that I taper off of the opiates, I cannot because there is nothing else I can take due to stomach issues. Knowing well that my opiate use may be the root cause of my bile duct dilation, I have approached my doctor about a pain patch as I had in the past, but he always gives me the same response, "there is a black box warning."
I did not understand why you have had to taper off of the pain medication if it has provided you with relief. Perhaps medical marijuana would be of help, as it has for me on occasion. I am aware that our healthcare system is screwed up, and especially more difficult for those of us who are age 60 or older. A neighbor of mine recently told me that when she goes to pick up her Norco at the pharmacy, they hold back 5 tablets each time, and that she has now started hoarding the pills because she does not want to be without pain medication. There are also stories on the news about senior citizens who sell their pain medication on the streets to supplement their income. So, I guess the pain medication issue is a double edged sword.
I am fortunate that my doctor renews my pain medication each month, and that my insurance company sent me a letter advising I would be able to continue with the dose for the next year.
It sounds like you are doing a great job advocating for yourself despite the pain you live with on a daily basis. I commend you for the actions you are taking in an effort to get the attention of "the powers that be." Where I live they seem more concerned about the candy colored fentanyl being sold on the streets than they are about those who suffer. I am not saying that drug cartels are okay, but rather that the same amount of attention should be given to many of us who require certain kinds of medication in order to live a more fulfilling life.
What state do you live in? I ask because I had to look for a real pain Doctor when I moved 12 years ago, until I found one I kept driving 4 hours every 3 months back to my old one.
Keep your head up, if you have not tried meditation please give it a try, it does help.
I’m new too and they to have gummies so you do not have to smoke, I couldn’t make it without my meds and my medical marijuana card hope you find rest 🙏
This app was just released by Brown University. Seems like a worthwhile project. I downloaded the app.
For those of you that cant get through the Boston Globe's paywall, here's a direct link:
Link to Apple store: https://apps.apple.com/us/app/soma-pain-manager/id6444110898
@jasl welcome, I’m glad you found us, however I am sorry you had to…
Pain is exhausting. I have a laundry list of issues that cause me pain. My problem is that my body doesn’t react well to any sort of pain reliever. Everything I have tried just knocks me out. I get way too sleepy to function so my quality of life is not good. Tylenol, regular not PM makes me drowsy! My mom had the same problem.
I use topical creams ie, Aspercreme, Bio-Freeze, Magnesium Lotion for the osteoarthritis, peripheral neuropathy, and fibromyalgia pain. They help me a lot.
I’m in agreement with you on the plight of pain patients. In 2019, I had a total knee replacement. The only pain relief I was provided was a solution of some sort of pain relieving liquid that was fed into my knee capsule via IV. That lasted 3 days. It was certainly not enough!
I understand both sides of the situation. My 45 year old daughter died in 2018. She overdosed on painkillers with fentanyl. Stephanie was not the usual portrait of a drug addict. She was a typical soccer mom with 3 beautiful children.
I tell you this because it’s so easy to become wrapped up in this stuff for many people. Our grandchildren are not growing up in the same world we did…
I wish I had the answer for this problem but I don’t think, at this point anyone can totally fix it. Thanks for your help!
@jas1 I too why you were “fast tapered” off of narcotics if you had/have chronic pain, is doesn’t compute. Now it seems you’re saying you don’t want pain meds and prefer going at it on your own? As an MS patient managing your pain is a problem but can be done. You should take the meds and feel better.
Love your title. We need 007 to find the missing link so we can replace it. I was removed twice because my pain manager didn’t agree with my Lyme treatment. (the first time- 30 years ago Lyme treatment was almost political) the second time because my pain manager sent me to his own infectious disease doc who wanted to repeat my Lyme test when I was in the middle of treatment and had a 2 inch chart 100 miles away at my LLMD. I didn’t refuse, just stated my insurance concern. These Lyme tests ae not always accurate, plus i’d rec’d treatment. I believe the DEA has come down on doctors so hard that they make up any reason. At the time and for several years I just could not wrap my head around it all. I had not done anything wrong. During the second hard withdrawal I saw an addictionologist because I figured he knew about that stuff. He put me on buprenorphine for a year and then back on my low dose F-patch because buprenorphine didn’t work. One day I called about my appointment and was told the office was closed. The DEA removed his privileges. No referral, no explanation, and no medicine. It was through the pharmacy that i discovered wht happened. Some tecnnical issue. This is medical abuse. But it’s inflicted by law enforcement. I use Rx cannabis, but like you have GI issues and very fragile weight, and Rx cannabis kept me out of pain management. Today I called back and another person says they may work with me, but not necessarily. Will look into this further into it. This is the first postive response I’ve gotten in two years.
Thank you for your support. I’m over 60 also. Life presents enough challenges as it is, but like a stream, we floated and now we are jammed in the rocks and it hurts. I’d like to float or better yet swim, again.
I’m surprised that a pharmacy hold back medicine. That seems a little fishy to me. Speaking of streams.
I wonder about that policy. I read that some chains have diverted medcine from patients, warranting DEA to put more restrictions on pharmacies. I have a friend on Li who is a pharmacists and up on current events, pertaining to medicines. I could refer you if you like, or send a link. or whatever is allowed here. : ) Would be wonderful i fpain patients everywhere could speak up, but honestly it’s not as easy as it sounds because of the pain! Some nights I get a bit of sleep, and I relish that. I think more clearly, able to organize better. Thank you.
I read they’re researching metabolism of meds in pain care, related to genetics. Do you know about that already?
I’m so so very sorry about your daughter. Your emotional pain is traumatic and is heartfelt. I find tears cleansing to the soul. Thank you for responding.